ASCO, Where Have You Been? It's Time to Recognize Cognitive Issues in Your Patient Consent Document

If the professional association that sets standards for oncologists doesn't seem to concern itself with timely disclosures, is it any wonder that clinicians in their hospital and community practices dismiss their patients' concerns as frivolous?

Co-author, 'Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus'

06/22/2012 11:49am ET | Updated August 22, 2012

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A few days back I was in Arlington, Va. at the National Cancer Institute's Sixth Biennial Cancer Survivorship Research Conference. I had been asked to speak about cancer and cognition, the topic of my book, Your Brain After Chemo. Memory issues are one of the potential side effects of chemotherapy and the organizers wanted me to discuss the research/medical community's seeming lack of attention to a phenomenon that affects quality of life.

That wasn't hard to do. I continue to receive letters from readers telling me that although they now understand what's happened to them cognitively as a result of cancer treatment, they can't seem to get their medical teams to take their concerns seriously. There is a common thread: They bring up their memory issues to their doctors only to have their worries waved away, dismissed, as if it's all a figment of the imagination.

To illustrate this disconnect, I showed a slide of a sample patient consent form that I downloaded from the ASCO (American Society of Clinical Oncology) website. ASCO offers this form as a service to their members. Oncologists can then use the form to have their patients acknowledge the risks of chemotherapy.

So what's on this form that patients are asked to sign? Basically, it's a list of all the potential side effects (see the actual form here):

Nausea/vomiting

Hair loss

Low red blood count

Fatigue

Risk of Infection

Risk of bleeding

Constipation

Diarrhea

Mouth and throat sores

Skin effects

Muscle/bone effects

Nerve effects

Kidney/bladder effects

Sexual effects

Heart effects

Lung effects

Reproductive/fertility effects

Other

It doesn't take more than a glance at the 2008 form to see what's missing. And of course, that would be language such as "memory or other cognitive effects." That warning has not been incorporated into this outdated consent document even though cognitive issues can be far more debilitating than hair loss and nausea.

Now this is ASCO, a 30,000-member strong organization made up of oncologists and oncology professionals that sets the standards for patient care worldwide. It is their mission to advance the education of physicians and others who care for cancer patients.

And even though ASCO is highly respected and tremendously valuable, at least on this point, ASCO has gone AWOL. If the professional association that sets standards for oncologists doesn't seem to concern itself with timely disclosures, is it any wonder that clinicians in their hospital and community practices dismiss their patients' concerns as frivolous?

Adding another bullet and line of text to the consent document would take two seconds. But it's really about so much more than that. It's about closing the gap between research and patient. It's about leadership.

To learn more about "chemo brain," readYour Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus by Dan Silverman, M.D., Ph.D. and Idelle Davidson.